Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
Below, we’ll introduce you to three such people: Trevor Dunn, a young man with von Willebrand Disease, Dawn Evans, an adult woman who is asymptomatic carrier of Hemophilia A, and Barry Haarde, an adult male with severe Hemophilia A. All of them have discovered a form of physical activity that is enjoyable and adaptable to […]
HFA’s Research Team gave and received early an holiday gift this year: knowledge. We attended the 59th annual meeting of the American Society of Hematology (ASH) in Atlanta, Georgia, December 9-12. The unofficial song of the meeting was “Let it Snow” as that (along with the once standing Georgia Dome) is what was on the […]
In honor of National Caregiver Month, we’ll be featuring “Caregiver Heroes” throughout the month of November. While all in the bleeding disorders community are heroes in their own special ways, these folks are being given a special shout-out for the ways they take care of their loved ones and themselves. Meet Kelly from Nevada, who […]
Erik von Willebrand, a Finnish physician, noticed several young girls in one family shared symptoms of a bleeding disorder. The year was 1924, and von Willebrand recognized that the girls’ symptoms were different from those of someone with hemophilia, a disease mostly affecting males. He called this new disease pseudohemophilia, or false hemophilia, but others […]
von Willebrand Disease… ¿Qué es eso? ¿Qué clase de enfermedad tienen mis hijas? ¿Es contagioso? ¿Qué le puede pasar? Esta y muchísimas preguntas más fueron las que nos hicimos el día en que la pediatra en Albany, Nueva York, diagnosticó nuestra hija menor, Juliemar, 8 años a este momento, con von Willebrand Disease (vWd), tipo […]
Dear Addy, I have to do a presentation in front of my eighth grade class on a cause I care about. I’d like to focus on bleeding disorders because I have von Willebrand Disease (vWD), but there’s so much information and I don’t know where to start. Help! Signed, Anxious for an A Dear […]
Dear Addy, Last year, my friend with hemophilia started working for a specialty pharmacy. Since then, he’s been pressuring me to switch from my current pharmacy to his. Initially, he was polite and nice, taking me to lunch and then dinner to ask for my business. Each time, I told him I am content with […]
Dear Addy, Several parents that I’ve met at the HTC have recommended I should get my daughter a medical ID bracelet. Why is this so important? Are there resources available to help me get her one? Signed Inquiring About IDs Dear Inquiring, For patients with serious medical conditions like a bleeding disorder, it’s important that […]
The U.S. Food and Drug Administration today approved Vonvendi, von Willebrand factor (Recombinant), for use in adults 18 years of age and older who have von Willebrand disease (VWD). Vonvendi is the first FDA-approved recombinant von Willebrand factor, and is approved for the on-demand (as needed) treatment and control of bleeding episodes in adults diagnosed […]
Note: This is an edited version of a release originally published in Blood, the Journal of the American Society of Hematology (ASH). On August 3, 2015, the journal Blood published study data indicating that the first protein engineered to help control bleeding episodes in patients with severe von Willebrand disease (vWD) had been shown to be safe and effective, […]
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